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Focusing on the hidden disability

Fetal Alcohol Syndrome will affect every aspect of their lives for as long as they live

Posted: Sunday, March 09, 2003

[ CORRECTION ]

When Margaret and Lester Hunt's five adopted adolescent boys moved into their home in 2001, four of them chose to take new names to symbolize their new lives.

One no longer wanted to share an identity with his biological father, so he changed his name to Jake. Another wanted to assume the name of his adoptive father and grandfather and became Lester Allen III.

"They wanted to leave their past behind," said Margaret Hunt.

What the boys couldn't leave behind is the fact their mothers drank alcohol while the boys were in the womb. All five boys are diagnosed with some degree of Fetal Alcohol Syndrome - a disease that will affect every aspect of their lives for as long as they live.

"I know that when they grow up they're going to see what their friends have - apartments and cars - and ask why they can't have it too," said Hunt. "I just have to tell them that when their mom was pregnant, she drank alcohol, and it damaged their brain."

Problems associated with Fetal Alcohol Spectrum Disorders

• learning disabilities

• problems with memory

• behavorial problems

• poor judgment

• brain damage

• heart and kidney problems

• mental retardation

Source: Health and Social Services office on Fetal Alcohol Syndrome

FAS is caused by one thing only: a mother drinking alcohol while pregnant. Unlike those of crack or cocaine, the effects of alcohol on a developing fetus last a lifetime.

When the Hunts adopted the boys - from two separate familes - they did not know of their new sons' brain damage.

"We were told the boys were not diagnosed with FAS," Margaret Hunt said. But because of her background in social work, she was able to diagnose the boys unofficially only a few weeks after they arrived in her home.

"When I got the boys I started taking them to all their checkups with various doctors," she said. The doctors found a cotton swab in one ear and a bug in another in one of her sons. The cotton swab had been there for two years, doctors estimated.

"The FAS pulls into that," Hunt said. "He didn't have the coping skills to say his ear hurt or feels funny. He just didn't know how to say it."

Other signs of FAS for Hunt were when her sons said they would do something - what they had been told to do - then did something completely different. They also took an abnormally long time to do simple daily tasks such as eating breakfast.

"There's just a lot of little things," Hunt said. "These kids, they look normal."

Hunt's diagnosis was confirmed when she talked to the families of her sons, who confirmed the likelihood that the mothers drank during pregnancy. A full psychiatric evaluation in Anchorage made the diagnosis official.

Hunt's adopted sons face a situation typical of many who suffer with FAS: They look and act much like normal boys their age in social situations, Hunt said.

"Anywhere we go I have people tell me, 'Your boys are so well-behaved,' " said Hunt. Though some of them struggle in school, all of the Hunt boys have areas such as art or sports or math at which they excel.

The normal appearance and average intelligence of many who suffer from FAS is part of the syndrome's elusiveness, said Dan Dubovsky of the federal Substance Abuse and Mental Health Services Administration's FAS Center for Excellence. He was in Juneau last week speaking at two conferences on substance abuse and FAS, one sponsored by the Alaska Department of Health and Social Services and the other by the city-run Juneau Recovery Hospital.

"(People who suffer from FAS) sound OK if you're just talking to them," Dubovsky said. "Often they have normal IQs, and the majority don't have mental retardation."

Because of the normal appearance of people with FAS, many people think the contrary or disruptive behavior of FAS patients must be purposeful, Dubovsky said.

"When really, the bottom line in any setting - home, school, job, treatment, corrections - the bottom line is they just don't get it," he said.

People with FAS suffer from low adaptive functioning - the ability to apply knowledge appropriately in a given situation.

"It's the difference between learning a skill and adapting to use that skill," Dubovsky said.

Dubovsky illustrates this difference with stories of his son Bill, an FAS patient he adopted when Bill was 6. Bill was hit by a car and killed last fall at the age of 28, but Dubovsky's 22 years with his son gave him an intimate knowledge of FAS.

When Bill bought his first car, Dubovsky warned him not to get a speeding ticket, because if he did, Bill wouldn't be able to afford the increase in insurance rates and would lose the car.

"So when Bill was pulled over for a speeding ticket, and the officer went back to his car to write up the ticket, what did Bill do? He remembered that I said he would lose the car if he got a ticket, so he just pulled away," Dubovsky said. Bill then was arrested for fleeing from an officer.

Though fetal alcohol syndrome first was identified as a clinical condition in 1973, it is by no means "new," said Dubovsky. References to the birth defects associated with mothers who drink alcohol date as far back as the Bible, when an angel told Samson's mother not to imbibe wine or strong drink during Samson's gestation.

FAS is considered one of three Fetal Alcohol Spectrum Disorders, FASD, which is a newer term for the broad range of disorders that can result from consuming alcohol during pregnancy.

Knowledge of FAS and FASD is very limited, Dubovsky said.

"We do know that it is 100 percent preventable," he said. The disease is caused by the consumption of alcohol during pregnancy, and the child of any woman who drinks during pregnancy is at risk.

"I don't like talking about high-risk populations," he said. "My approach is that until somebody can show me that there is a whole population that is at risk, we need to talk about high-risk behavior."

The fact that the effects of alcohol on a fetus last a lifetime "doesn't mean we can't do anything to help," Dubovsky said. The medical establishment is just beginning to study treatment options for FAS.

With proper treatment, including one-on-one monitoring and sometimes medicines such as anti-depressants and mild stimulants such as Ritalin, people with FAS can lead lives that highlight their strengths.

"They tend to be very likable, very friendly," Dubovsky said. "They tend to really have a strong desire to be helpful. There are a number of them who have many strengths. What we need to do is build on those strengths."

As for the Hunts, they have no regrets about the children they adopted, Margaret Hunt said.

"These guys just ... they sparkle," she said. "There is so much love and care in them, and they want you to be happy. They want to see you smile."

Christine Schmid can be reached at cschmid@juneauempire.com.



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